Andrew Wakefield is an incompetent “scientist.” Of that, there is no longer any doubt whatsoever, given how poorly he and his collaborators did the polymerase chain reaction (PCR) studies that he did looking for measles RNA sequences in colon biopsy specimens taken from autistic children, studies in which they failed to do even the most basic, rudimentary controls for detecting false positives due to contamination with plasmid DNA sequences. The harm that came from his now falsified findings of that study, in which he claimed that the MMR vaccine was associated with autism and gastrointestinal problems in autistic children is now incontrovertible. He almost singlehandedly launched a wave of antivaccination hysteria that caused MMR vaccination rates to plummet and vaccine-preventable diseases to skyrocket in the U.K., a hysteria that is only now starting to abate. Not only that, but Wakefield was paid to do this “research” by trial lawyers who were looking to make some money suing vaccine manufacturers.

I had always wondered how Wakefield had gone about getting those colon biopsies. Obviously, he must have done colonoscopies on autistic children. I had heard that there had been at least a couple of complications doing colonoscopies that were, in essence, not justified medically. Now I’ve learned the details of at least one:

An autistic boy has won a £500,000 payout after the hospital at the centre of the MMR scandal carried out an operation that was ‘not clinically justified’.

Jack Piper, then five, was left battling for life after the procedure, which his parents claim was carried out to establish links between his condition and bowel problems.

His bowel was perforated in more than 12 places during surgery at the Royal Free Hospital in North London.

At the time, it was at the centre of controversy after employee Dr Andrew Wakefield claimed that the triple measles, mumps and rubella jab was linked to autism and bowel problems.

High Court papers alleged that the colonoscopy procedure performed on Jack in 1998 was ‘not clinically indicated or justified’. They also claimed the ‘principal reason’ for the surgery was to further research into links between autism and bowel conditions rather than Jack’s clinical needs.

Perforated the colon in more than twelve places? What the hell was the gastroenterologist or surgeon using to do the colonoscopy? A fireplace poker? Don’t get me wrong; perforation is a possible complication of colonoscopy, and virtually every surgeon or gastroenterologist, even the best, who regularly does colonoscopy has perforated someone’s colon. (Indeed, if an endoscopist says he has never perforated someone’s colon, he probably hasn’t done enough procedures.) But twelve perforations? In the same colon? That appears to go beyond the pale.
In expert hands, colonoscopy is a pretty safe procedure. True, there is the risk of bleeding or perforation, but it’s uncommon, with the risk of perforation being around 0.2% after a routine colonoscopy and somewhat higher if biopsies or polypectomies are done (or even less), while the risk of significant bleeding is around 1/1000. In children, the risks are slightly higher, because of the smaller diameter of the lumen of the intestine and thinner colonic wall. Small perforations can often be treated conservatively, with bowel rest and antibiotics. Usually these are the sorts of perforations that manifest themselves with post-procedure abdominal pain and a small amount of free air (air outside of the intestinal lumen) on an abdominal X-ray. For larger perforations (large amounts of free air) or if there is abscess formation other symptoms, surgery may well be needed to repair the hole. Fortunately, if caught early, the colon can often be repaired using laparoscopy to put a stitch or two into the colon to sew the tear closed. This is safe because of the pre-procedure preparation to clean out the colon of feces, which usually means that contamination of the peritoneal cavity will be minimal early on after the injury. However, if the diagnosis is delayed and there is time for colon contents to leak into the peritoneal cavity, causing an abscess or even diffuse peritonitis necessitating a laparotomy, colon resection and a diverting colostomy or ileostomy will likely be required. I do not know if this is what happened to Jack Piper, but this is the additional description of his clinical course:

Jack, who lived in Hertfordshire before his family moved to York, had the operation which went ‘catastrophically wrong’ in November 1998.

He then spent two weeks in intensive care at Great Ormond Street Hospital. He suffered multiple organ failure, including kidney and liver problems.

He suffered a swollen brain and neurological problems. He has also developed epilepsy and suffered stomach ulcers. The botched operation ‘significantly increased’ his dependence on others. Now aged 14, he needs round-the-clock care.

Unfortunately, I don’t have enough details to know whether multiple biopsies were taken. Even if they were, making twelve holes in the colon would take some doing, and making twelve holes without recognizing at the time of the procedure that they were made is hard to imagine. Obviously, it happened, but it does not speak well for Professor Simon Murch, the surgeon who did the colonoscopy. Neither does this:

The colonoscopy was suggested by Professor Simon Murch. He is being investigated by the General Medical Council over allegations that he carried out invasive tests including colonoscopies on 11 other children contrary to their best clinical interests.

Professor Murch, now professor of paediatrics and child health at Warwick Medical School, denies the charges. If he is found guilty of serious professional misconduct, he could be struck off.

“Struck off”? I love British lingo.

Even worse than doing medically unnecessary invasive procedures to obtain biopsy material to test a hypothesis is that apparently the parents were not informed of the risk of the procedure. Indeed, the consent form routinely used by Wakefield does not even mention the risk of perforation. (It also lists a huge battery of unnecessary medical tests that these unfortunate children were made to endure.) Looking at this consent, what shocks me perhaps most of all is that this consent form’s wording was apparently approved by the Royal Free Hospital’s human research committee. Whether Dr. (or is it “Mr.”) Murch had them sign another, better consent (like this one) or not, I do not know, but I do know that the consent for signing up for Wakefield’s protocol was a joke.

What we appear to have had here is a breakdown of the normal mechanisms that evolved in Western nations in the wake of World War II after the revelations of the horrific medical experiments carried out by the Nazi and Japanese regimes and then decades later, after revelations such as the abuses of patient rights that occurred during the infamous Tuskegee syphilis experiments. For whatever reason, in pursuit of his goal of proving that MMR somehow causes autism or “autistic enterocolitis,” Andrew Wakefield was able not only to subject autistic children to a number of invasive procedures, such as colonoscopies and lumbar punctures, but he misused the tissue obtained from these procedures through his incompetent laboratory techniques. In other words, the research subjects in Wakefield’s studies went through it all for nothing–worse than nothing, in fact, given that Wakefield used the results to spark an unjustified antivaccination backlash against the MMR vaccine.

Sadly, we in the U.S. are not immune to Dr. Wakefield, either. He’s on the staff at Thoughtful House, where colonoscopies are routinely recommended for autistic children with bowel complaints. I sure hope that the staff at Thoughtful House does a better job at informed consent than Drs. Murch and Wakefield did at the Royal Free Hospital, particularly about the fact that the very existence of “autistic enterocolitis” as a distinct entity is controversial at best. The information on its website about colonoscopy doesn’t make me optimistic that they do, unfortunately. Nowhere is the risk of perforation even mentioned, and “autistic enterocolitis” is discussed as though it’s an accepted clinical entity, when the evidence for any link between MMR, autism, or enterocolitis is dubious. Although a subset of autistic children may actually have GI problems that warrant colonoscopy, the information on the Thoughtful House website confidently makes it sound as though most, if not all, autistic children will require this invasive procedure (and certainly any autistic child with any GI complaints whatsoever), which makes me worried that there may be another Jack Piper at some point, only this time in Texas.

Comments

The colonoscopy was done by a gastroenterologist referred by Wakefield?

Sounds like the best have a tendancy to surround themselves with the best, and the worst clearly surround themselves with the worst. This is clearly a buyer beware situation that is virtually knocked unconsience by desparate parents or guardians.

Yet another child whose health and wellbeing has been destroyed. All because he was guilty of being autistic.

These poor kids, and even kids with other disabilities are being experimented on, drugged, electroshocked, tortured and even murdered just because they were not the kids their parents wanted them to be. It is criminal.

Unfortunately, being “struck off” doesn’t involve having his sorry arse sued or facing criminal charges for the damage done. The system in the US is flawed because it exposes too many doctors to trivial lawsuits and drives malpractice insurance through the roof; here’s it’s almost the opposite. Too many seriously incompetent doctors get off scot free because the system still contains the Victorian elements which protect them.

Thank you for the thorough background on this tragic case, AND for drawing the lines to such as Tuskeegee, and those “experiments” of WWII, because the lack of sufficient informed consent, and oversight reminded me of those past embarrassments of “medical” history.

Uncle Dave and Prometheus – I think this goes beyond “Birds of feather flock together” I think the least competent of doctors are drawn to this sort of quackery because of the low opinion other docs have of them. It is a way of getting back at them – “See – I know something you don’t and I can cure something you can’t” Like the conspiracy theorists they gain a sense of superiority from their highly unconventional views.

Orac, PalMD – is there anything to this leaky gut syndrome (the non-iatrogentic kind) or is it just SCAM nonsense? Also, if the colon is perforated during a colonoscopy is it usually obvious to the physician doing the colonoscopy? I assume that if it had been noticed at the time, the complications would not have occured since the colon is very clean during a colonoscopy.

..and the culpability arguably went wider than just Wakefield and Drs Murch and Walker-Smith (the other two under investigation with Wakefield, and who were almost certainly the treating paediatricians of record).

Brian Deer has obtained many the the original internal memos from the Royal Free which are available here

They can be read as showing, shall we say, a certain “wish to believe” in the MMR and Autism study within the Royal Free hierarchy, even when people both inside and outside the hospital raised concerns about the ethics of what was going on.

Oh, the irony of the ‘Daily Mail’ telling us this, though they hardly make it clear that the harm was caused by people chasing an unfounded belief in the MMR vaccine’s toxicity. The ‘Daily Mail’ has always beenat the vanguardof scare-mongeringover MMR and autism or bowel disease, even recently advising parents that“Not having your child vaccinated means your child is not put at any risk at all from the possible negative sideeffects of the MMR jab or the separate measles, mumps and rubella vaccines.”

PROS: It’s quick, free and vaccinates your child immediately from three dangerous illnesses. The vaccine is 95 per cent effective and, since its introduction in 1988, rates of deaths from any of the three diseases it guards against have fallen dramatically. There is no risk period of infection in between vaccinations as there is with the single vaccines.

CONS: The MMR jabs have attracted a great deal of controversy in the past 20 years, due to clinical studies linking the vaccine to a number of serious side-effects.

These include autism, inflammatory bowel disease and febrile seizures, as well as other conditions such as thrombocytopenic purpura (ITP), a bleeding disorder, and a newly discovered one called enterocolitis, which in essence is late-onset autism coupled with bowel problems.

I’m always particularly sickened when I see Wakefield lapping up the adulation of parents of autistic children. When he launched his experiments on these kids, he didn’t give a toss about autism: he just needed to get into childrens’ guts and spines – with the tubes and the needles – and nobody else was going to let him do it.